Choose cabin fever over corona fever: Tips for Parkinson's disease patients and families to survive the corona COVID-19 crisis
Top Questions and Answers on COVID-19 and Parkinson’s Disease and Cabin Fever rather than Corona Fever.
If you have fever, cough or shortness of breath call your doctor and get advice as to next steps. Sometimes with Parkinson’s disease they will ask you to stay home and not come in. They may ask you to come in and get a test but DO NOT go in without calling first. They need to make sure protective gear is ready and they are ready to isolate you when you come in. Stay home and stay safe. We are writing this blog and will offer tips to survive the Corona Virus crisis.
Top tips:
· Wash your hands for 20 seconds frequently- sing happy birthday twice while washing. Please use soap.
· Socially distance (stay home and limit visitors). The social distance is usually 6 feet or more between people. We recommend no visitors if possible.
· If you get sick call your doctor’s office first before presenting so they can be ready to protect you and others. “They need a heads up to plan.”
· Cancel all group gatherings (support groups, exercise classes, etc.). No card games and no events. Stay home!
· Reschedule all non-urgent doctor’s appointments and obtain 3 month supplies of medications.
· Inquire whether your appointments can be performed through the phone or tele-medicine. Staying safe means no appointments. Cancel hair appointments, exercise classes, etc.
If you have Cabin Fever that is GREAT. Cabin Fever is what you want and what you don’y want is Corona Fever.
Stay home and stay safe. I tell my patients if you are not getting Cabin Fever you are doing something wrong. Cabin Fever will help you prevent Corona Fever.
Is it possible that Parkinson’s patients are more at risk of developing COVID-19 ?
Parkinson’s patients of any age are considered “high risk” meaning that if they get COVID-19 it may be a more difficult course for them to recover- after they get the virus. We are not aware of any data that suggests people with Parkinson’s disease are at greater risk for getting COVID-19. The “high risk” category is applied to all Parkinson patients (regardless of age) as we would like to prevent you from getting the virus- as recovery could be difficult in the setting of a degenerative disease such as Parkinson’s.
The other issue to keep in mind is that age is emerging as an important factor. If you are >60 or >70 years of age (regardless of whether or not you have a diagnosis of Parkinson’s disease), the recovery may be more complicated from a Corona virus infection.
Is the immune system compromised in Parkinson’s disease?
No. You should be reassured that Parkinson’s disease is not considered immune compromised though there may be subtle differences in immune function.
Should I Parkinsn’s patients get the pneumonia vaccine?
Yes, all Parkinson’s patients should get regular pneumonia vaccinations. We also recommend you get the flu vaccine and consider the shingles vaccine.
Should I cancel my doctor’s appointments?
Maybe. If not urgent, phone your doctor, get a refill of medications and reschedule. If urgent phone your doctor and set up a safe time to be seen in person and in isolation. Some practices will perform the visit by telemedicine or by phone.
Will my doctor’s appointments be cancelled?
It is possible and you should phone before considering whether to come in or reschedule.
My Parkinson’s medication: I need some tips…
How do I obtain a 90-day supply of medications?
Call your doctor’s office and ask for a 90 day supply of all medications. Most insurance companies are allowing this to happen (even those usually only allowing 30 day supplies). A 3-month supply will likely get you through this crisis. Many of the countries manufacturing medicines are starting to come back online so we think 3-months is adequate.
What is there is a shortage in Parkinson’s medication?
This is possible and that is why a 3-month supply will protect you. Consider also your doctors can often substitute many other medications in case your brand is unavailable. We do not expect this will happen.
I want to take over the counter cold and flu medications with my Parkinson’s? Ok?.
Yes. In general over the counter medications are safe. However, watch out for drug-drug interactions which include MAO-B inhibitors (selegiline, rasagiline, Xadago, others) which should not be mixed with dextromethorphan (common in over the counter cold medications). If you happen to have high blood pressure avoid pseudoephedrine. I wrote a blog for Parkinson’s patients seeking over the counter flu medication at Parkinson’s.org: https://www.parkinson.org/blog/whats-hot/over-the-counter-medications-flu-season
I can’t get my family to stay home with Parkinson? Help?
Avoid hospitalizations or clinic appointments with Parkinson’s and Corona and use telemedicine if you can with your doctor. Social distancing will be the key to not getting Corona. Avoid all visitors to the home. Tell your family that cabin fever from staying home is better than corona fever.
I can’t visit my relative with Parkinson’s in the nursing home? Help?
Use telemedicine and phone calls as much as you can. As terrible as this situation is, it is to protect your loved one. If you are considering taking your relative home please call your doctor and discuss the risks and benefits of removing them from the facility. Can you prevent falls, fractures and provide the 24/7 care they need? Don’t rush into a decision to move them from the nursing home or facility.
I am worried about blood pressure and Parkinson during this Corona crisis…
Parkinson’s disease and Parkinson’s medications both decrease blood pressure. The symptom(s) to watch for is “passing out” or dizziness when changing position . A few treatment options….ask your doctor.
Stop or reduce blood pressure medications
Hydration
Compression stockings
Abdominal binders
Medications such as florinef, midodrine, droxidopa
For high blood pressure talk to the doctor and internist.
Sometimes with blood pressure medications (florinef, midodrine, droxidopa) the blood pressure goes up when you lie down….raise the head of the bed 30 degrees or more and use Lazy Boy style chairs as simple fixes.
I need tips for travel and COVID with Parkinson’s:
Should I travel? Should I fly with Corona and Parkinson?
No. Do not travel. Stay home, socially distance and get cabin fever but not Corona fever.
What does socially distance mean in Parkinson’s?
Stay home, stay 6 feet more apart from other people.
Parkinson’s patients and rehabilitation and nursing home facility information in Corona crisis:
Should I take my Parkinson’s relative home?
Be careful with this decision and weigh risks and benefits as they may need to be with you for several months. Make the choice for safety and not for comfort. Use telephone and other modalities to keep in touch if it is not the right thing to do to move your relative out of a rehabilitation or nursing setting (FaceTime, Skype, etc.).
Should I take my relative with Parkinson’s disease to the hospital?
Maybe. Call your doctor first if possible. In extreme emergencies use emergency medical services (shortness of breath, chest pain, etc.). If you can work with your doctor as the situation evolves we can keep your loved one safe and also prepare the facility for a potentially safe hospitalization. Finally, Parkinson’s Foundation has a great Aware in Care hospitalization kit which is free and can be obtained by calling the 1-800-4PD-INFO helpline. It will help you survive a hospitalization.
My spouse with Parkinson’s is quarantined? Help?
This is a tough situation and we recommend regular phone calls and video-chats. Remember as tough as the situation is- we need to keep your spouse and everyone around them safe.
Should Parkinson’s patients get the flu vaccine?
Yes. Flu, pneumovax, and in some cases the shingle vaccine are all recommended for Parkinson’s disease patients. They are all safe!
Should I move in with a relative since I have Parkinson’s and am in a COVID-19 high risk category?
If this is possible, it is definitely worth considering.
Is there anything Parkinson’s patients can do to prevent Corona infection and how can we flatten the curve?
There is no preventative medicine for Corona at the current time. Malaria drugs and other compounds are under investigation but we should not all rush to take them and extinguish the national supply until we establish how they how and who they may best serve. Regular handwashing, social distancing, avoiding crowds and staying home is what every Parkinson’s disease patient can do to help. In your home, limit visitors and ideally take in no outside visitors.
Flattening the curve- what does it mean? If we allow the virus to infect a lot of people quickly there will be a spike in cases that will overload the healthcare system (doctors, nurses, ventilators, protective gear). If we all stay home and socially distance we can flatten the curve by eliminating the peak. This will allow us to handle the coming Corona crisis.
Should I get dental work or haircuts during the Corona virus crisis with my Parkinson’s?
No, unless urgent we don’t recommend dental work, haircuts or other procedures.
What about ibuprofen and COVID-19 in Parkinson’s patients? Is it safe?
Yes, ibuprofen ingestion with Corona virus is likely safe and also safe in the setting of Parkinson’s disease. Just because people have worsened with Corona and when taking ibuprofen does not mean ibuprofen is bad. If you are still worried you can always take Tylenol. It is likely we will have the data on this issue soon, but in general most experts believe ibuprofen is safe.
Any tips on getting food delivered for Parkinson’s during the Corona crisis?
Many services like Amazon Prime, Instacart and others will deliver groceries to your door. We recommend using a credit card and paying up front and having the delivery people leave the package on your doorstep. For food deliveries from restaurants we recommend the same procedure. After delivery remove wrappers and wipe down surfaces and throw away bags.
Is there a vaccine for Parkinson’s disease Corona infection?
There is no vaccine for treatment of Corona virus whether you have Parkinson’s disease or not. Vaccines will take a year or more to develop and test, so for the time being stay home and get cabin fever so you can avoid corona fever.
Amantadine is an antiviral? Will it help to take amantadine for prevention of COVID-19 Corona since I have Parkinson’s anyway?
The short answer is no. Amantadine was an anti-viral drug serendipidously shown to have action against Parkinson’s symptoms. Most experts use it for dyskinesia suppression. It used to be a powerful ant-flu medication, however the CDC decommissioned it in 2005-6. We don’t know if it has action against COVID-19 but we suspect no. We think malaria drugs which work on RNA may have a better chance of fighting the virus but time and data will tell us.
I have healthcare workers coming to my house each day to care for my loved one during the Corona Virus crisis, How can I protect my spouse with Parkinson’s disease.
The most important thing you can do is to educate the healthcare workers entering your house. You need to be sure that the workers understand that every contact they have outside your home can potentially spread the virus back to your loved one with Parkinson’s. These workers need to either move in with you or to socially distance and isolate when in their own home.
Another tip is limiting the number of workers to one or two trusted helpers who you believe understand the gravity of limiting social contact.
My spouse has deep brain stimulation. How should this be managed during the COVID-19 Corona Crisis? I am worried about programming and medical management. What if I need a DBS battery change?
Make sure you phone your doctor about any upcoming deep brain stimulation programming visits. In many cases these visits can be delayed. If you do have an in person visit, many devices can be programmed in such a way to offer you flexibility to make adjustments of your device in your own home (you may already have this function and can ask your doctor or health care professional by phone). If you are worried you can request flexibility to program your own device at your next in person appointment. In most cases, once the DBS device has been in place for 4-6 months, programming adjustments are rarely required. Most of the management for DBS patients after 6 months is through medication optimization and this can be handled by phone.
If your DBS battery depletes (or runs out) this can create a potential urgency or emergency as your symptoms may return. In most cases, medical centers can change batteries in an outpatient surgical settings and will not deem this as “elective surgery.” Make sure you request an outpatient battery change ,especially if you are worried your symptoms will rebound and worsen without deep brain stimulation. If you think that you can bear the symptoms and wait it out that is a good option too. In our experience many patients with Parkinson’s disease cannot wait it out. Because of rationing of supplies and for safety reasons some people seeking battery replacements may be asked to delay the procedure.
I have Parkinson’s disease and need botulinum toxin injections for my dystonia. I am worried that during the Corona virus crisis I will not be able to get these shots. Any advice?
We are recommending that patients requiring botulinum toxin injections call their doctor immediately. You and your doctor need to define the risk versus benefit of bringing you in person for an injection. Additionally, since medical supplies are in short supply, you may be asked to delay the injection if possible. If you are delayed in getting your injection, your doctor may be able to recommend medication or other therapies while you wait out the crisis.
To read more books and articles by Michael S. Okun MD check Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/
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